Editor’s note: Elaine McCauley is a brain tumor survivor and an employee at University of Minnesota. The following account was written by McCauley, who is an advocate for brain tumor awareness and provides support for brain tumor patients and their families.
Three years ago, I was diagnosed with a brain tumor. It was the scariest thing I’d ever faced, yet years later it would turn out to be a huge silver lining.
One morning at work, my right hand suddenly went numb and my right arm felt heavy and odd. Moments after, my right upper lip went numb. Acutely aware that this was on just one side of my body, it really got my attention.
The building I worked in on the University of Minnesota campus was connected to University of Minnesota Medical Center, so I immediately went to the emergency department. An MRI revealed that I had a golf ball-sized brain tumor. I was introduced to my care team, led by Neurosurgeon Andrew Grande, MD. He explained that the tumor was pressing on my brain, rather than being in my brain, but it still needed to be removed. His calm demeanor and confidence were reassuring for us.
By the end of the day, I knew I’d be having brain surgery soon. Brain surgery! One week later, surgery confirmed that my tumor was a benign meningioma. I headed home to rest, heal and to get steadier on my feet over the next several weeks. My family navigated my post-surgery medications and care.
Fast forward three years when our 29-year-old daughter Teresa (at right in photo), who never had headaches, started experiencing frequent headaches. With the combined family history of brain tumor and sudden onset of headaches, her doctor ordered an MRI. We’re a family that believes in having “a second set of ears” at appointments. Accompanied by her dad, Mike, Teresa was told that her MRI showed what appeared to be a glioblastoma—a form of brain cancer. Shocking and scary news. The good news was that I knew an excellent neurosurgeon at the University of Minnesota, and that’s who we wanted for Teresa.
When we met with him, Dr. Grande reviewed Teresa’s MRI and told us it looked like a grade III tumor (brain tumors are graded on a scale of I to IV; the higher the number, the more malignant). He told us it needed to come out and that meant brain surgery. Teresa, recalling how I needed a caregiver for a time after my brain surgery, turned to us and said: “I guess I’ll be coming back home for a while.”
What we learned from my surgery and recovery would only begin to prepare us for helping Teresa. She had her first surgery in September, one week after her diagnosis. While Teresa recovered from surgery, we set up a bedroom at our house for her. She experienced temporary left-side, post-surgery paralysis and spent one and a half weeks in acute rehab.
We joined her for many of her physical and occupational therapy sessions, to observe and support her while she worked hard to regain strength and mobility. She landed back in the hospital, diagnosed with meningitis. By the time she was discharged, we had been trained to administer antibiotics in her PICC (peripherally inserted central catheter) line several times daily.
Brain surgery patients have individual recoveries. But early on, Teresa and I both experienced some fuzzy thinking and unsteadiness. To keep her safe, we stayed close by her and managed her complicated medication regimen. All this time, she continued to experience headaches. Since she wasn’t driving again yet, we took her to follow-up appointments, outpatient physical and occupational therapy and reproductive medicine appointments, as well as on personal errands. It wasn’t always easy for her to be chauffeured, but we all understood this was temporary.
Tumor growth led to a second surgery in November. By now, we were well trained in post-surgical care. Radiation treatment started soon after and we drove her there daily until she got back behind the wheel in early December. After the beginning of the year, Teresa began her chemotherapy regimen and returned to work.
A seizure took away her driving again and during this time, side effects from radiation and chemotherapy contributed to her surgery incision reopening, which resulted in a long course of antibiotics for infection. We were trained to do the daily change of her antibiotic IV bag and pump. Eventually, this complication led to removal of the skull bone flap cut out during her initial surgery.
From the beginning, Teresa has worked hard to maintain her independence and stay in the driver’s seat for her care and treatment plan. Being a caregiver of an adult patient means learning quickly to balance between being the second set of ears at appointments and being her mother and knowing when not to step in to help. Teresa remains determined, realistic and positive.
Through surgeries, hair loss, side effects of treatments and medications—and the emotional roller coaster that people living with cancer and their families ride—we continue to walk alongside Teresa and are grateful that she welcomes us to be there.